Tag Archives: this is me

Unlike the short story that the title alludes to, this post is about happy things.

August 2012

When I started blogging, it was scary to be writing about myself. I had no idea what me talking about me sounded like. At first I think I simply imitated the voices of other bloggers I liked, holding myself at arm’s length as a defense mechanism.

I probably shouldn’t have been as worried as I was. Few people read those early posts in real time. A lot of you have since mainlined the entire blog (in chronological order, no less), but at the time, I was mostly shouting in the wilderness.

There have been times when I’ve been tempted to go back and revise some of the early posts. I had little knowledge about autism and no right sounding as authoritative as I did. But I’ve let them stand as they are because I like the record they create and I like the evolution I can trace in my writing and in the way I’ve come to think about autism and being autistic. I’ve learned a lot in 26 months, some through research and self-examination, but just as much through the comments that so many of you have generously shared.

As the number of comments on each post has grown, I’ve come to see my writing as a conversation starter and I look forward to seeing what readers will add to my initial thoughts.

I suspect this may be too esoteric or scattered or specific, but I’m putting it here in the hopes that it will strike a chord with some readers. My writing style is shifting as I find it harder to hold the thread of long passages of text and I’ve decided to give in to that and see where it takes me. If you’re in the mood to read something more conventional, JKP has posted an excerpt from my book in which I explain why it’s called Nerdy, Shy and Socially Inappropriate.

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I’m in an in-between place, much like the one I found myself in after learning more about Asperger’s and before getting diagnosed. If you’ve been there, you’re probably familiar with the swirl of feelings in-between places evoke–certainty and hope shot through with doubt, fear, and confusion. Determination, undercut or perhaps fueled by intermittent anger and frustration.

The in-between places are hard. We no longer quite feel like the person we were; we’re not yet the person who will emerge on the other side of this no man’s land.

*

Liminal (adjective):

of or relating to a transitional or initial stage of a process.

occupying a position at, or on both sides of, a boundary or threshold.

*

The spaces between, the grey areas, have always fascinated me. When I wrote fiction, I was endlessly picking at the in-between places. Perhaps because I find them so hard to stomach in real life.

I’m not good with uncertainty. Literally, my number one reason for seeking out an autism diagnosis was peace of mind. I needed to know if I was making it all up in my head / imagining myself into a neurology / selling myself a bill of goods because I’d grown weary of looking for answers.

To put my mind at ease, someone who ‘knew about these things’ would have to validate my suspicions in a way that I couldn’t do for myself. That piece of paper, I figured, would get me over the hump and out of the in-between place of “this feels right but what if . . . ?”

It did, though not quite in the way I expected. It was more anti-climax than epiphany. But it was a path to closure and closure was what I needed to get on with life.

*

I understand that having access to a paper diagnosis is a privilege. At least, I thought I did. Maybe I’d overestimated the depth of my understanding.

Once again I find myself stuck in an in-between place, this time with no immediate possibility of a diagnosis. Months of making the rounds of doctors and tests have told me only what is not the cause of my language difficulties.

I’m left with three possibilities:

this is temporary and will resolve itself when it’s good and ready

this is something serious and the evidence that would allow a diagnosis is years away

this is my new normal and I should learn to live with it

Which is a bit like being told, “there’s probably nothing serious causing that limp but if there is, we’ll know for sure when your leg falls off.”

*

If I’m being honest, I need to admit that number 3 on that list is true regardless of whether I’ve won the prize behind door number 1 or door number 2. Months going on years is too long a period to simply keep hoping tomorrow will magically be different.

It dawned on my last weekend that one way out of the in-between place is acknowledging that where I am now is my new normal. That is a hard conclusion to arrive at when the new normal appears so much shabbier and rundown than the old normal.

But there is no practical reward for living in an imaginary future. It only fuels that awful feeling of suspended reality and in-between-ness.

*

Things I am learning to hold close and be with:

uncertainty

anger

sadness

imperfection

fear

*

In the in-between place, it helps to keep reminding myself that it’s okay.

It’s okay to feel certain and uncertain, often at the same time. Feeling one doesn’t make the other untrue.

It’s okay to doubt myself, to feel insecure and crazy at times. Like the anger, fear, sadness and frustration, I can feel those things, move on when I’m ready, come back to them when I have to.

It’s okay to not have an answer. There are more unknowns in the universe than there are knowns. See also: the unknown unknown.

It’s okay to change. 2500 years ago Heraclitus said, “You could not step twice into the same river” and there’s a reason people still quote him. We are constantly changing, like it or not, accept it or not, realize it or not.

It’s okay to ask for validation and it’s also okay if not everyone I share my experience with offers validation. Ultimately, I have to punch my own ticket.

It’s okay to feel like I’m the only one who knows my experience and, at the same time, it’s okay to identify with the experiences of others, even if I don’t share their diagnosis yet or never will. Adapt what is useful applies to more than just kung fu.

I’ve spent the last six months looking for the threshold of this in-between space. Surprisingly, I found it in the confirmation that there would be no answer, not now.

Maybe that’s a kind of resignation. Not a giving up, but a giving in, a practical acknowledgement of reality. I’m done struggling with this thing for now. There is a kind of tired relief–a quiet sense of peace–in acceptance and I’m ready to embrace that.

I don’t know how to title this. I don’t know what verb to put in that gaping blank space. I don’t even know if body is the right word.

Maybe brain is more correct, though my brain keeps reassuring me that it knows exactly what it’s doing. It points fingers at my uncooperative mouth and unruly hands, blaming the execution when I’m quite sure something must be going wrong further up the line, in the commands or perhaps the translation from thought to action.

And yet . . .

It’s clearly physical, too. Physiological? I watch my hand go astray as it writes letters that I’ve know how to form–that I’ve been writing without conscious thought–for forty years. Even as my brain is putting on the brakes and mentally shouting at my fingers that an “S” doesn’t look like that, my hand carries merrily on, barely finishing an extra loop or a backward curve before I bite my lip and, with a level of concentration more commonly seen in first graders, trace over the letter until it looks right.

Less obviously physical, but just as confounding, when the word in my head doesn’t match what my fingers type or my mouth blurts out, it feels like an accident of the body. A localized failure to follow orders.

And yet . . .

The brain directs the body, is part of the body. So let’s say body. It’s all a little less scary that way anyhow.

That still leaves the verb. The action. What is this dance that I’m doing with my uncooperative body these days?

All I know for certain is that I need an -ing form, denoting an event in progress.

Taming an Uncooperative Body?

I wish. Taming implies making something easier to control. What’s happening has its own timing and progression. The best I can do is to try to keep up with the changes as they make themselves known, one by one, steadily more strange.

Wiling an Uncooperative Body?

I should know by now the outcome of “just try harder” in these situations, but I still fall for it. Occasionally sheer will works. I’m pretty good at forcing myself through unpleasant tasks when necessary. But with writing? Having a conversation? Mostly I end up cranky, with an achey head and a strong desire for a nap.

Ignoring an Uncooperative Body?

Ignoring worked for a while. When the oddities and slip-ups and errors were an occasional thing, I could pretend they didn’t bother me, that I was being a silly perfectionist. They were annoying, yes, but still easy enough to ignore. We’re past that point now, and have been for a while.

Accommodating an Uncooperative Body?

I tried–and continue to try, though with less enthusiasm–to find accommodations that work. I’ll talk instead of writing, I assured myself. I’ll use text-to-speech to check for errors. I’ll switch to handwriting, slow down my typing, outline, make notes, scaffold, revise as much as it takes. Give up Facebook groups and commenting and reading a zillion blogs and articles, reduce my communication load and stop volunteering for projects. I’ll have silence day and learn sign language and only write on “good” days and settle for a word that’s close enough when I can’t find the one I really want.

Each one worked for a while, until it didn’t anymore. A series of Maginot lines and my brain invaded Belgium every time.

Fighting an Uncooperative Body?

At times, I do, out of stubbornness, a refusal to give in, pride. I’m angry a lot these days. At what, I don’t know. Myself? Why? It makes no sense to be angry at myself for something I’m not purposely doing. Maybe at life, circumstances, the way irony is only truly ironic when it’s happening to someone else.

Maybe I’m more frustrated than angry. Maybe the exact descriptor of the emotion is irrelevant. Instead, if I say that the headbanging urge arises too easily and too often, does that convey what I’m feeling? If you’re autistic, I suspect it does. I guess that’s where the fighting comes in. Because I have to still that urge, patiently walk myself back from it, seek another outlet for that feeling. That takes energy, effort, sometimes just plain blunt force. I’m thankful for a lifetime of practice.

Mourning an Uncooperative Body?

Probably too strong and certainly too final a word, but there’s an intense sadness and feeling of loss that walks beside the anger. My ability to express myself in writing has always been one of the things I thought no one could take away from me. I assumed it was a constant.

My skill with words wasn’t just a strength, it was (is? I don’t know anymore) part of my identity. Writing is an integral part of who I am–one of my oldest and dearest special interests, one of the things that defines me. And I’m sad and scared and angry that it’s possibly dying or, at the very least, deserting me for a while.

Where do you escape to when you’re trying to escape the very thing that has always been your most comforting safe space?

Questioning an Uncooperative Body?

Who is this person I’m becoming? There’s an incongruity that’s developing in the gaps of who I am and who I think I am (was? have been?), between the aspects that continue to be strong and the areas that I’m struggling with in ways I have no contingency plan for.

When I’m not writing or talking or listening, I feel as whole and competent and as much myself as ever. I go out to run in the morning and the ideas flow just as they always have and I think “yes, today is the day.” Then I sit down at the computer, stupidly optimistic, eager to write what’s running around in my head and quickly begin to wonder what kind of tricks my brain is playing on me, what made me believe that today–unlike yesterday or the day before–that today would be the day that I could get from thoughts to words so easily.

Disguising an Uncooperative Body?

Increasingly there is the need to disguise my confusion. How often can I ask The Scientist to repeat himself until his frustration surpasses mine? How often can I reasonably tell him that I need silence because listening to speech, trying to link one sentence to another, holding the fragile tenuous meaning of his words in my head until I can respond requires more effort that I can manage in the moment?

How odd does it look to others when my response to the repetition of a question is “sorry, I didn’t realize that was a question” followed by a request to repeat it one more time? How much easier it is to nod and smile and make affirmative noises and hope I’m getting it right.

Of course, The Scientist is on to me and has started repeating himself when his question is met with confused silence or a tentative guess at an answer.

Living In an Uncooperative Body?

My first instinct was “living with” but there is no “with” here. I can no more live with my body than I can be a person with autism. I am my body, uncooperative or otherwise. Increasingly, I find myself gravitating toward activities that don’t require language. I read less, write less, talk less, watch TV less, run more, walk the dog, workout, listen to music, cook, take long bike rides, swim, play games, tend my container gardens, watch The Scientist fish.

Accepting an Uncooperative Body?

I don’t have much choice on this one. The more frequent and pervasive my language problems become, the more I’m being forced to accept that this is the status quo, at least for now, at least until I know otherwise.

There is also the fact that while I’ve lost a fair amount of my communication ability, I’m still able to communicate many things verbally and in writing. My expressive and receptive language has become literal and concrete and often requires more effort than I’d like, but it’s still functional in ways that matter a lot to me. I should be thankful for that. But the sense of loss is still strong at this point and I’m having trouble getting to a “glass half full” way of looking at things.

*

And so I’ve run out of verbs. I suppose, secretly, I’d hoped that finding the right verb would mean finding a solution, but I can’t write my way to answer on this one.

Not all posts are about answers, though. Some are simply here to say if you found anything in these words that you relate to or you’ve been in this place or you’re in a place like this right now–you’re not alone. And neither am I.

Last week was quiet around here because my dad was hospitalized on Sunday and I was away from the computer for most of the week. However, Jeannie Davide-Rivera of AspieWriter.com invited me to participate in a writer’s blog hop (and gave me a deadline!) so here I am. Jeannie is the author of a terrific memoir, Twirling Naked in the Streets and No One Noticed, which I was lucky enough to get to read as she was writing it. She also blogs on a wide variety of autism-related topics, including a series of answers to frequently asked questions that she’s recently started adding to her regular blog. Jeannie’s blog was one of the first I ever discovered and I learned a lot from reading her writing as I was exploring whether I might be autistic too. If you’re not familiar with her blog, check it out.

The Writing Process blog hop is basically (for me, at least) a chance to do a structured infodump on a life-long special interest: writing. The cool thing about this blog hop is that it’s migrated from nonautistic writers to writers on the spectrum and is now making its way through the autistic community (Mike Monje was also tagged by Jeannie and will be posting this week.).

On to the questions . . .

What am I working on?

Um, nothing? I’ve finished up the final major edits on Nerdy, Shy and Socially Inappropriate, which will be released by Jessica Kingsley Publishers in September (yay!). The book is a combination of revised bits from this blog and new material, organized thematically into a sort of “user’s guide” to life on the spectrum. I’m really happy with how it turned out and am looking forward to holding the printed book in my hands.

Technically, I should be working on a piece that I’ve been invited to submit to an anthology and some new blog posts and the next article for AWN, but writing gets a little harder with each passing week, so mostly I’m working on being kind to myself around the writing process.

I’m working on writing a lot on days that I can feel the words and the mistakes are few.

I’m working on not melting down on days when I discover that nearly every sentence I’ve written has multiple errors.

I’m working on writing without judgment, on writing and rewriting and rewriting some more.

I’m working being satisfied with what I can do, even if I don’t quite feel like I’m being as clear or as articulate or as precise as I’d like.

I’m working not being embarrassed when I write a ten word tweet and discover an hour later that two of the ten words aren’t actually there.

I’m working on letting the process take me where it does and having fewer expectations.

I’m working on relying less on words, on supporting others through showing up and being present and hoping they understand.

I’m working on not giving up hope of getting back to a place where words have feeling and shape again.

How does my work differ from others in the genre?

This is hard because there is so much diversity among autistic writers. I feel like we’re each very different in our approach and writing style and the topics we write about.

I do a lot of research and try to blend research with my personal experiences. Autism is one of my current special interests, so I enjoy digging into a topic and reading about it in depth as background for a post. In some ways that often makes my writing wonkier and more technical than the average blog. Also longer.

For last few months I’ve been enjoying interviewing other autistic women and including their stories in the articles for AWN. I was starting to get tired of writing about myself all the time so that’s been a refreshing change of pace. It’s forced me to develop a slightly different writing style, which I don’t quite feel comfortable with yet, but I’m eager to keep working at.

Why do I write what I do?

I started blogging for myself–to understand myself better. I never really expected it to go anywhere beyond being an outlet for processing my own realizations and giving me a place to infodump about what was quickly becoming a massively time consuming special interest. That people found what I was writing interesting was a happy surprise.

A few years ago, I tried to talk my way into a creative nonfiction class at the university where I was doing my economics degree. The professor asked me about my writing experience and specifically whether I’d ever written any memoir. Well, no. Needless to day, I didn’t get into the class. At the time, I couldn’t imagine what on earth I could possibly write about myself that would be of interest to anyone. I figured creative nonfiction meant the stuff I so enjoy reading in the New Yorker but the professor had other ideas and deemed me an unsuitable candidate.

Life is funny like that, I guess. I’ve always loved to write. Fiction for fun and nonfiction for work. But writing about myself–opening up my life and thoughts and experiences to strangers–was the last thing I expected to ever do. It’s been an interesting process, one that’s made me stronger and more vulnerable as a person.

Along the way, something else that’s very important to me has happened too–this has developed into a space where people feel comfortable sharing their stories too. That was something I’d hoped for in a “wildest dreams” kind of way. Hopefully, by creating a place where we can learn from each other, I can give back to the community some of what I found when I first wandered into other autistic writer’s blogs looking for clues about myself.

How does your writing process work?

New ideas nearly always originate in real life. A conversation had or overheard. An observation that raises a question. A quirky detail that I can’t quite figure out. Something I’ve read and found exciting or annoying or confusing.

Once I have the seed of an idea, I like to let it germinate in my mind. I’ll come back to it throughout the day or while I’m contemplating the meaning of life at 3 AM. Often I take tough ideas out for a run, literally. Some of my best thinking is done while running or walking the dog. Eventually the idea will take on a specific shape and that’s when I start writing.

I usually write as much as I can off the top of my head, then begin researching to fill in background, answer questions or challenge my own theories. If a topic is difficult, I might start with background reading, let the idea grow in my head a bit, then go back to more serious research. Generally, though, I like to get some fresh thoughts down before I start reading what others have to say about a subject.

I rarely start at the beginning of a post and almost never know how a piece of writing will end. Half the fun of writing is seeing where an idea will take me. If I know the ending, there’s no point in even beginning to write but there’s no sense of mystery or discovery along the way.

Finally, I revise a lot. Right now I have 23 draft posts in my Google docs folder, all in various states of revision. Some posts I’ll write in an hour and have ready to publish in a few days. Others I’ll let sit for months, going back to look at each occasionally until I find the right way of saying what I want to say. And some never see the light of day.

Up Next

Part of this blog hop deal is tagging other writers to participate. Hop on over to these blogs to check out what they’re up to and read their responses to the blog hop questions next week:

Sparrow Rose Jones is the author of “No You Don’t: Essays from an Unstrange Mind“, a terrific collection of essays about her experiences as an autistic adult. She blogs about autism and advocacy related topics at Unstrange Mind and is also a fantastic musician and has taught me a great deal about autistic culture and history.

Alyssa is a prolific blogger who writes about autism-related topics at Yes That Too. She’s been in China for the past academic year and is returning to the US soon. In addition to writing nonfiction, fiction and poetry, she’s an artist who creates cool visual patterns, which you can find at Because Patterns.

Yesterday morning, The Scientist and I unexpectedly had to Do A Thing that neither of us had ever done before. For some reason–probably because I’m an eternal optimist–I volunteered to go into the town hall to find out how to Do The Thing while The Scientist waited outside with our dog.

Right inside the door there was a Help Desk so I approached the woman seated behind it and said, “There’s an office where I can Do This Thing here, right?” and she said, “Yes but, here let me spend ten minutes explaining five different excuses why you can’t actually Do That Complicated Version Of The Thing here and will have to drive to a nearby town to Do The Thing.”

That sounded inconvenient but I was so focused on Doing The Thing that I took the Post-it note with the address of The Other Place To Do The Thing and figured it was an unplanned hour lost from my day, but if that was what it took, fine.

Outside, I explained about the ten minute conversation with the five different excuses to The Scientist who said, “Grumble grumble grumble” and, instead of admiring my informative yellow Post-it note, immediately went inside.

Sensing that confrontation was afoot, I walked the dog around the parking lot, still clutching the Post-it note.

Sometime later–but certainly less time later than the hour it would have taken me to follow The Lady of the Five Excuses’s directions–The Scientist emerged from the town hall and told me that The Thing was done because, in fact, it was possible to Do The Thing there.

Fine. Awesome. Great job.

Not really.

I had mixed feelings about his ability to Do The Thing, especially after I’d just been told by the same person that “no, absolutely, definitely, certainly not possible to Do The Thing here.”

The Scientist was clearly having his own mixed feelings. We decided to grab a coffee and talk over our giant stew of feelings because that’s what married people do and that’s especially what we do.

What Happened?

Sitting in Starbucks, we proceeded to dissect our contrasting experiences. I felt a bit like Watson to The Scientist’s Holmes as he explained how he’d managed to Do The Thing.

He told me that while he’d been waiting outside for me, a town employee walked by and The Scientist said, “Hey, do you know how I can Do The Thing” and the guy said, “Sure, there’s an office in the basement. It’s not my My Thing but there will be someone in The Thing Doing Office who can help you.”

That explained a lot. I’d taken the woman at her word because she’d told me that The Thing Doing Office couldn’t help me when I’d specifically asked. Clearly, she didn’t want to be bothered interfacing between me and The Thing Doing Office when she could just send me away and go back to reading ‘Divergent’ instead.

Which is no surprise. This happens all the time, right?

But here’s what is surprising: the way The Scientist and I viewed what had happened.

To me, having to go to another office to Do The Thing was inconvenient but I was so focused on Doing The Thing that I didn’t think beyond, “This is a little annoying.” I took the information I’d been given at face value because I had no other contradicting information to weigh it against. The social nuances of the situation–especially that the other person’s objectives might be different from mine–didn’t occur to me in the moment.

To The Scientist, the woman was a bully who was taking advantage of my lack of information and trying to make less work for herself by turning us into Someone Else’s Problem. As he recounted his conversation with The Lady of the Five Excuses, I noticed that many of the details he included pertained to the subtext of the conversation.

The things that rarely occur to me on the fly. The things that I can usually pick out later, after much analysis of a situation. The things that I was only starting to realize as we compared our experiences. In other words, the pragmatic (rather than the literal) use of language.

I was so focused on getting my goal accomplished–on using language as a tool to gain factual information–that I didn’t question the motives of the person I was asking to help me.

The Scientist, with the added assurance that he’d gained from his conversation with the town employee, did.

And that, in part, was the difference between our interactions with The Lady of the Five Excuses. When I Do Something New, I usually research it first. If I’d had time to prepare to Do The Thing in advance, I would have gone online to read about Thing Policy and Procedure. I would have Made a Plan, complete with a script. When The Lady of the Five Excuses gave me her song and dance routine, I would have known she wasn’t being straight with me and called her on it, backed up by an encyclopedic knowledge of Thing Policy and Procedure.

The Scientist, on the other hand, isn’t much of a researcher when it comes to minor interactions. For him, the casual chat with the town employee plus his ability to read the social nuances of a situation–It’s 8 AM and The Lady of the Five Excuses doesn’t want to deal with your complicated problem–are enough information for him to go on. When you factor in his in-tact pragmatic language skills, he’s doing a lot more on-the-fly interpretation and adjustment during a typical interaction than I am.

Not Usually This Naive

At least I’d like to think so. But I am literal. I see Help Desk and assume help will be forthcoming. And I’m goal oriented. I want to Do The Thing. A person says “Here’s how to Do The Thing” and my brain just goes straight to “Yes! Let’s Do The Thing now!”

There’s also this: I usually make up for with facts what I lack in pragmatic language skills.

If I know that I’m going into an unfamiliar situation, I go armed with plenty of background information. Then I run a continuous comparison of the information I’m receiving against my known facts. I also rely heavily on pattern recognition–people who are lying tend to fit one of a few predictable patterns.

Maybe my bullshit detection program wasn’t running in high gear. I’m usually pretty good at detecting when someone is trying to put one over on me. And at pushing back. Hard if necessary. This was a low stakes situation, though. Spending an additional hour doing something isn’t a very high cost.

If I hadn’t had The Scientist’s experience with the exact same person to compare my own experience against, I would have been inconvenienced by Doing The Thing in the Less Convenient Place, but I wouldn’t have thought beyond that. The social implications were secondary to Getting The Thing Done on that particular day.

A year or more ago, I might have felt a need to justify my thinking to The Scientist and he might have felt the same. It was a startling reminder of how much has changed in the past year to sit there in Starbucks with him, enjoying our coffee and marveling at how differently we see the world and how, as long as we’re each happy with the way we see things, that’s just fine.

I sat down this morning to write up this week’s Take a Test Tuesday post. I took the test last week and I have my results and some notes written up so I wasn’t too concerned about leaving it until Monday to get it finished. Then, thanks to Tumblr, I discovered 2048.

The good news: I’ve gotten the 512 tile twice and I’m feeling pretty good about my chances of beating this thing

The bad news: There’s not going to be a Take a Test Tuesday post this week

This happens sometimes. Discover something new, accidentally lose a few hours, rearrange expectations for the day. In this case, I think it’s part stim, part perseveration. But sometimes it’s a new special interest or a new aspect of a special interest. Whatever it is, I’ve learned to stop (eventually) and ask myself what I’m not doing and why. Because this kind of time loss tends to be a sign that I’m avoiding something, at least in part.

The answer this morning is obvious. Writing is becoming harder and harder. I find myself writing less, putting it off. The frustrating thing is, my desk and my drafts folder are strewn with ideas for posts. I want so much to write, but the mechanics of it are increasingly making it a slow (if you’re curious how slow, this took me close to 45 minutes to write and edit), difficult process. I’ve also started to lose my feel for words, which is a bit scary. I write by how language feels and these days it mostly feels flat and lifeless. That’s making my writing increasingly literal and (to me, at least) boring.

Okay, so this post took a strange turn for the morose but I’ll leave it because it’s part of the breadcrumb trail documenting my language difficulties.

I’m going to give myself this week off from posting, I think. My daughter and her boyfriend are coming to visit later in the week (yay!) and we have lots of fun things planned. I’ll be back next Tuesday with a test for us to puzzle over. Until then, good luck getting that elusive 2048 tile.

Recently, while writing something, I was struck by the idea that there is no Rain Woman, no archetypal autistic woman in pop culture. Later, I realized that while we don’t have a fictional archetype, there is a woman who many people associate with being autistic.

If you’re a woman on the spectrum, within moments of mentioning to an acquaintance that you’re autistic or have Aspergers, you’ll often be asked, “Have you heard of Temple Grandin?”

This is a bit like asking a physicist if they’ve heard of Stephen Hawking. Probably, right?

The thing is, the average physicist has little in common with Stephen Hawking. And I have little in common with Temple Grandin.

I’ve seen Dr. Grandin’s speeches, read her writing, and heard a great deal about her accomplishments and her life story. And aside from the fact that we’re both on the spectrum and are women, we have very little in common. She has an advanced degree, is a professor and internationally recognized speaker, and has invented technology that revolutionized her field. She was diagnosed with autism as a child and had extensive therapy growing up. She is unmarried and has chosen not to have children. She’s been known to say that her work takes the place of an intimate partner relationship in her life.

Temple Grandin fits the popular culture model of “autistic equals brilliant loner” and like the Rain Man stereotype, I can’t see myself in that model. For one thing, I’m not brilliant. There’s a huge gap between smart and genius. Smart is getting a perfect grade on a math test. Genius is reinventing the way something is done. I would love to be a genius. Who wouldn’t? But I’m not and, in fact, few autistic people are. Continue reading I Am Not Temple Grandin→

I write a lot about the more challenging aspects of being autistic but not today. Today is about the awesomeness that is my autistic brain.

When I read Suzanne Wright’s letter about Autism Speaks’s view of autism, I was shocked and angry. Again and again she used the phrase “This is Autism” in bold letters. Yet the autism she was describing was nothing like the autism I know. I watched the protests unfold across the internet and still those words burned in my mind: This is Autism. Linked to misery and loss, burdens and hopelessness, broken families and broken children.

That’s not my autism and it’s not the autism that I see in the people and families in our community.

What is my autism?

This is my autism: Getting stuck on that phrase and not letting go of it. Getting so stuck that I can’t not think about it. So stuck that I have to act. Perseveration. Obsession. Special interest. I don’t need a national Call to Action. All I need is an idea that I can’t let go of.

This is my autism: Waking up in the middle of the night and creating a flashblog website. Because if my body has decided that we’re done sleeping for the day at 1:45 AM, why not put those extra hours to good use.

This is my autism: Learning to use Blogger, because I’ve always been curious. Reading, researching, problem solving. Forgetting where the new post button is every single time, even though it’s big and orange. Or maybe because it’s big and orange.

This is my autism: Stimming with joy at the first submission, at the enthusiastic signal boosting and the support of our allies, at watching someone type their thoughts into the submission doc, at logging in to find a dozen new submissions, at reading the words of so many people who feel like I do about autism–words that directly counter what Autism Speaks wants the world to think.

This is my autism: Hyperfocusing for hours on scheduling posts. Making a plan. Creating a system. Organizing, organizing. Cutting and pasting, cutting and pasting, cutting and pasting. Making notes and lists. Rewriting the lists. Revising the system. Rewarding myself with a cupcake.

This is my autism: Completely immersing myself in something I love. There are no half measures, no going slow, no wait and see. Once I’m in, I’m all in.

Autism is different for each of us. It’s hard and joyful and confusing and wondrous, just like life. It’s what makes my brain seize onto an idea and race after it, full of excitement, completely engaged.

This flash blog? This is autism.

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a/n: Thank you to all of the people who supported the flash blog by contributing, signal boosting, sharing and cheering it on, especially Beth, Heather, Sharon, Alyssa and Leah for their help in organizing and promoting it these past few days.

Before we get to today’s post, an announcement: As part of the avalanche of advocacy this week, there will be a flashblog on Monday, Nov 18th. You can find the info at “This is Autism” Flashblog. It’s open to autistic individuals, parents and allies and is accepting writing, video, graphic and comics submissions.

On to the post . . .

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Sometimes [often?] I feel invisible.

I thought this feeling would go away when I grew up. Feeling invisible as a kid is normal, right? Everyone is bigger than you. Smarter, more experienced. And the ones who weren’t bigger or smarter or more experienced, were funnier or prettier or . . . something.

I never quite understood what that something was, just that I didn’t have it. When teachers forgot my name, I shrugged and mumbled it for them. Then mumbled it again when they mistook my mumbling for Sandy or Sydney.

And really, to be honest, I never wanted to be one of those kids who everyone knew. The popular kids. Too much pressure. Too much attention. I like blending in. Getting a “well done” sticker next to the “100%!” on my spelling test was about all the positive attention I needed to keep me satisfied.

Still, I assumed being an adult would mean an end to feeling invisible.

*

Invisible is like this: I’m at a neighborhood holiday party. I’m sitting on the couch, talking with someone I know and enjoying it. A stranger sits beside me, inserts herself in our conversation as strangers do at neighborhood parties. She asks typical stranger questions. Do you live in the neighborhood? Where are you from? What do you do? We both turn to her and answer, suspending our conversation in favor of this getting-to-know-you talk.

Do I sound resentful of this intrusion? A little, but more in retrospect, because I know what’s coming.

Slowly, gradually, nearly imperceptibly, I feel the three-way conversation is becoming a two-way conversation between the stranger and the person I was talking to. Eventually, I settle back into the couch so they don’t have to keep leaning forward to talk around me. I listen to their words volley back and forth, unable to find a way back into the conversation, which has now turned to a subject they’re both passionate about.

I wait it out some more, picking at the plate of food on my lap, stuck in a rut of smile and nod as they glide from one subject to another. As much as I want to regain a footing in the conversation, I feel like I’ve disappeared from their radar. Bored and uncomfortable, I finally excuse myself, pointing to my empty plate, saying cheerfully that I want to go check out the dessert table. They look surprised and maybe a little chagrined, as if they only just realized that I’d fallen silent ten minutes ago.

*

It’s easy to assume they had something in common–something I didn’t share–so it was natural for them to become intensely involved in a 2-way conversation. Except that this story repeats itself too often to be “them and not me.”

This is probably fixable. If I was more assertive, made more effort, worked harder at learning conversation skills.

But the invisible feeling comes up at other times too. It’s there when I watch other people take credit for something I’ve done. It’s there when I post something to a group and no one responds. It’s there when someone seems to contact only if they need me to play tech support for their ailing computer. It’s there when someone promises to do something and then forgets, leaving me waiting like an overexcited kid who hasn’t yet realized that there will be no trip to the amusement park today.

The problem, I see, as I’m writing this, is not so much the practical side of learning to be assertive in social situations. As a child, I was clueless about how to make myself seen and heard. As an adult, I have the potential to do something about feeling invisible, but the feeling itself is now the problem.

To write this, I had to force myself to be with it. Invite it to sit here beside me so I can examine it. And I don’t like it. I don’t want to do the hard work that I know is necessary to befriend the feeling and defang it. But I don’t want to let it haunt me anymore either.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.